Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa

Abstract

Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers' primary stressors related to day-to-day patient care and emotional support; secondary stressors included financial hardship, family responsibilities, and social isolation. Caregivers' social, relational, spiritual, and psychological resources mediated the effects of these stressors. Strengthening one resource strengthened others, but the failure of one resource hindered other resources, exacerbating burden. In providing caregiver support, policymakers and service providers should focus on enhancing caregivers' resources as well as alleviating their stressors.

Palliative Care, Suffering, Death Trajectory: A View of End-of-Life Care (EOL) Related Issues in Sub-Saharan Africa (SSA)

“…Palliative care at EOL in SSA countries can be considered a mixed picture, with most SSA countries without any service, few in various stages of development (mostly on paper plans, or with a few declared professional interest) [ and not as a mainstream public health initiative [18]. In short the situation in SSA countries is one of relative scarcity of palliative care services and resources'.…”

Family cancer caregiving in urban Africa: interrogating the Kenyan model

“…However, studies show that HBC services also include support for other chronic and life-limiting illnesses including cancer (Lindsey, Hirschfeld, Tlou, & Ncube, 2003;Streid et al, 2014). The HBC model incorporates the services of trained healthcare professionals, community-based volunteers, and family members who often play the role of primary carers (Powell & Hunt, 2013).…”

“…Caregivers' tension between valuing community support and the stress of visits was reported in a study of caregivers of patients with incurable progressive illnesses in South Africa and Uganda (Streid et al, 2014). A caregiver in the cited study noted that, on one hand, visitors met her needs for social interaction.…”

Dificuldades De Cuidadores De Pacientes Em Cuidados Paliativos Na Estratégia Da Saúde Da Família

“…Furthermore, one should consider that, in addition to being an eminently biological event, it is also part of a social construction influenced by meanings individuals attribute to it and, that directly influence care delivery. 7 Palliative care always targets both patient and family since the family provides and receives care. 2 In this context, there is a primary caregiver, generally a close family member, who assumes the responsibility to care for a dependent patient without any financial compensation, and who often ends up relinquishing his/her own life.…”

“…The literature has shown that caregivers experience significant physical, emotional, social, material, financial and existential burden, especially when the care process is prolonged and the disease is in an advanced stage. 2,[7][8] This study is justified by the need for researchers to better understand this context through field research and to identify the specific care needs of this group within the sphere of palliative care, as well as the need for reflection upon the work developed by the FHS based on the integrality and interdisciplinary principles.…”